Consumer involvement in setting research priorities

A study into consumer involvement in research and development agenda setting for the UK National Health Service [1] found:

People are involved as individuals or as members of organised service user groups or charities working on their behalf. They are either consulted about research needs, or invited to work collaboratively with researchers or research funders. Occasionally it is the service users who take the initiative and either they lead the research themselves, or researchers or research funders respond with research.

Involvement occurs in many settings, such as interviews, focus groups, town meetings, committee meetings, or participative research teams. People who are merely consulted play no formal part in decision-making. Where they share in the decision-making, as part of a collaborative working relationship, the decision-making may be formal or informal.

Most is learnt when service users are involved collaboratively, and they play a part in planning, evaluating and reporting their involvement.

A scoping review [2] of priority setting for new research found:

Most studies addressed clinicians’ priorities, often studies of nurses’ priorities.

Fewer studies were comparative: six compared patients’ priorities with priorities set by researchers or funding agencies; three compared clinicians’ priorities with priorities set by researchers or funding agencies; 42 compared patients’ priorities with clinicians’ priorities.

Some studies addressed the priorities of people other than patients, for instance, policy makers or administrators.

From the information available in the abstracts, none of the studies appears to address the priorities of both patients or the public and clinicians, and also take into account researchers’ priorities.

Community engagement in health improvement

The first review [3] addressed the question: ‘How effective are community engagement approaches at improving health and well-being and reducing health inequalities among disadvantaged groups?’ The findings suggest that community engagement (CE) encompasses a wide range of health topics and populations, predominantly healthy eating/physical activity and low-income populations. The studies suggest a primarily moderate to low overall extent of CE across all aspects of study design, delivery and evaluation. The majority of outcomes showed beneficial effects or positive trends for a range of health behaviours, clinical measures, health/social status, self-efficacy and knowledge, attitudes or intentions. However, there were no clear trends in terms of effectiveness in the subgroups examined. There did not appear to be a relationship between the strength and direction of the effects and the length of the intervention or final follow-up measure. While the synthesis of evidence seems to suggest that a higher extent of CE is linked to more beneficial effects and positive trends across outcomes, this must be tempered by the overall moderate to high risk of bias in this set of studies.

The second review [4] investigated: the effectiveness of CE approaches in improving health and wellbeing, reducing health inequalities and encouraging people in disadvantaged groups to participate in activities to improve their health and wellbeing and realise their capabilities; the processes and methods that facilitate the realisation of community and individual capabilities and assets amongst disadvantaged groups; any unintended consequences; and the processes that are more aligned with effective than ineffective interventions. The findings suggest that higher behavioural outcome effect sizes are achieved through community members leading or collaborating on the design, delivery and evaluation of an intervention. However, while high extent of CE was seen in low-income groups in particular, subsequent meta-analyses provided no firm evidence of differences between these or any other disadvantaged groups, due to the methodological limitations of the studies. No studies were found which could answer the questions relating to processes or unintended consequences. It appears that that continued involvement of community members throughout the entire lifespan of a collaboration (i.e. through design, delivery and evaluation) leads to higher effects, and that CE addressing some health issues may show higher effects than in others.

The third review [5], investigating online social media/networking, concluded that CE is not used across the design or evaluation of health interventions, and the type of engagement undertaken with intervention delivery focuses on peer interactions alone. This suggests that there is very little co-creation of knowledge or building of social capital occurring in evaluated health intervention studies using such media.